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Monday, July 11, 2011

Blegging again

Alert readers will have noticed the re-appearance of the PayPal button on the top of the sidebar.

I have a big spiel about this. There's stuff that's been going on. Stuff I'm going to write about as soon as I can. Long, thoughtful post coming.

Meantime, suffice to explain for the moment that expenses have been well covered by the kind donations so far, but it turns out that we've got further to go than I had anticipated. It is working out that the whole procedure, if everything goes as I hope, will take me into late September/early October to be finally done.

I'm scheduled to be back in the hospital next Monday for the second cycle of chemotherapy. Then there is a long wait for recovery and then surgery, then recovery from surgery. In there somewhere, I have to get MRI and CT scans, blood tests and whatnot. Between expenses for drugs, user fees for scans and tests, transport and phone/transport, I'm looking at a lot of ongoing costs.

But there is actually something more pressing and important.

The big problem during the first two weeks after the first cycle of chemo was that I was alone and didn't have enough information or the right kind of medication.

I am pretty far out of Rome, and it is a big undertaking to come out here for most of my friends who are still here. The other problem is that most everyone I know is either gone or at the busiest time of their work year. This is the height of tourist season and most people I know here work in the tourist trade.

For the last round of chemo, we were given only one day's notice before I went into the hospital, which made it impossible for people to change their work schedules to be with me. I did all the preparation I could, shopping, cleaning, cooking, laundry-ing and organising as much as possible in the 24 hours they gave me. But there was nothing at all to be done about finding someone who could be here with me. The side effects of the drugs were a lot worse than we had been led to expect, and we simply could not find anyone who was able to come out here and stay.

The doctors had not warned us about the possible side effects of chemo, and when I developed peripheral neuropathy, and the pain and paralysis that went with it, I had no idea what was happening and really could not cope. It was difficult to reach anyone to talk to at the Gemelli, I was unable to get out of the house to go see a doctor locally and I could not get prescriptions or even to the emergency room (which is one town over) by myself. It turns out I had not been give the right kind of pain medication for neuropathy, a condition that is notoriously resistant to regular painkillers and that left me unable to walk unassisted.

The upshot was that for the first, and by far the worst, week of recovery (and among the worst weeks of my adult life) I spent most of my time alone, in pain and, frankly, terrified.

The doctor told me that the second round of chemo will be worse than the first, since the effect of the drugs, particularly the neural damage, is cumulative. It takes months for nerves to heal and there are only three weeks between cycles. This means that I am going to be in worse shape after the second round than I was the first time and will take longer to recover.

The trouble is that this is the very worst time of year to be doing this. All the people I know leave Italy starting in June, and by the time I'm out of hospital after the second cycle, there really isn't going to be anyone around.

A friend has found a voluntary organisation, based in a town close to me, that helps cancer patients with home helps, rides, nursing, information and various kinds of support. This will be a big help and I've already got a ride to the Gemelli on Monday with a hope of some help at home. But what I really need is someone, anyone really, who is able to be here during the first couple of weeks.

This leads me to the gist of the PayPal button. I have a friend who wants to come and stay to help me during recovery. Sarah was my roommate here, but had to go back to the US unexpectedly in February, a little less than a week before all this started. This might sound an odd thing to ask, but we could really use a little help with her air fare. She is the only person I know who is not either married and looking after a husband or family, or completely snowed under with work or schoolin', who is willing to come all the way here to help. We are hoping to find a reasonable flight for the early part of August.

It seems funny to me that the loss of my hair should have so failed to upset me. But this may be because I have now got a keen sense of just how dangerous and debilitating chemo is: nerve damage, kidney damage, liver damage, debilitating pain and paralysis, all help to put an extra-short haircut into perspective.

Christopher has chastised me for being all stiff-upper-lip, stoic-British, and failing to "clearly articluate my needs" to the people who care about me. And a few days ago, Kathy Shaidle, who has had Lupus, warned me not to try too hard to be the "brave little sick girl" all the time.

So I'm gritting my teeth and asking for help. To be honest, I'm really scared about next week. What I have already experienced, and what I expect to go through, has broken down the barriers. The last round was, frankly, terrible and facing it mostly by myself was one of the worst things I've ever had to endure.

I realise times are difficult for a lot of people, and I don't want to diminish the help I've already received, both from my good readers and from my friends here, but I could really use some company in the next few weeks and months.

Thanks.

Hilary

~Update:

Once again I am deeply moved by the generosity of my readers and friends. Thank you everyone.

I've been asked to put up a little note about the currency and donating from different countries. When you log in, if you are not doing so from Canada, you have to click the thing saying what country you are in. It's in the upper-right-hand side of the PayPal home screen. My Paypal account is set up to receive Canadian funds. I'm not entirely sure how it works, but I think you can donate in any currency and Paypal will automatically turn it into Cdn with an appropriate exchange rate. That's what happened last time. People sent in funds in three currencies and it was automatically all worked out by Paypal.

~Update to the update:

Here are Steve T's very helpful instructions.

Right. I'm the chap who requested the PayPal update. Clicked on Hilary's donate button again today, and it's differnet than yesterday.

Here's the proper instructions on using PayPal to toss some cash to Hilary if you aren't Canadian:

1) Click on her donate button.2) Her Paypal page will come up, with the email she uses for PayPal transactions. (I am not reproducing it here for fear of the dreaded spambot finding it and using it to barrage her with spam at this inconvenient hour.)3) Copy the email she uses for PayPal transactions.4) Close that page.5) Call up the PayPal appropriate for your country:

6) Make a payment through your country's PayPal system, using the email address you copied from Hilary's PayPal site. (Be sure to use that one, her contact email on her blog is quite different.)

PayPal will do its magic behind the scenes and convert your currency into Euros.

If you are actually in a country that uses Euros, the process is the same: get her transaction email, go to your local PayPal, and proceed.

ADDENDUM: if one goes to the U.S. site, https://www.paypal.com/, there one will find the thingie (i.e., the drop-down list) that will allow one to select their own country. Merely click on the words "English (United States)."

NOTE: one must actually be surfing from a country from the U.S. for this to appear. (There are terribly geeky things such as cookies that control this.)

CORRIGENDUM: "one must actually be surfing from a country from the U.S. for this to appear"

Please mentally replace the word from with the words other than. Thank you.

Right. I'm the chap who requested the PayPal update. Clicked on Hilary's donate button again today, and it's differnet than yesterday.

Here's the proper instructions on using PayPal to toss some cash to Hilary if you aren't Canadian:

1) Click on her donate button.2) Her Paypal page will come up, with the email she uses for PayPal transactions. (I am not reproducing it here for fear of the dreaded spambot finding it and using it to barrage her with spam at this inconvenient hour.)3) Copy the email she uses for PayPal transactions.4) Close that page.5) Call up the PayPal appropriate for your country:

ADDENDUM: if one goes to the U.S. site, https://www.paypal.com/, there one will find the thingie (i.e., the drop-down list) that will allow one to select their own country. Merely click on the words "English (United States)."

NOTE: one must actually be surfing from a country from the U.S. for this to appear. (There are terribly geeky things such as cookies that control this.)

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